The Mental Capacity Act 2005 and dementia: An urgent need for clarity? 

Cardiff law student Michael Thomas analyses the legislation’s impact

According to statistics from Alzheimer’s Research UK, there are 982,000 people currently living with dementia in the UK, and one in three people will develop dementia in their lifetime. Most people with the illness, according to Dementia UK, “reach a point where they cannot make their own decisions”. Such a diagnosis puts enormous pressure on patients and their families. Not least of their concerns will be the determination of critical healthcare decisions that may need to be made in the future, once the patient has lost capacity to make decisions for themselves.

Fortunately, the Mental Capacity Act 2005 (MCA) offers people in situations like this the opportunity to make an ‘Advance Decision’ whilst they have capacity that will be followed in the event they lose capacity. This is a way for patients to continue to maintain autonomy over their bodies and treatment following their loss of capacity. However, there has been academic discourse — most specifically from Sabine Michalowski — suggesting that the law does not offer sufficient protection to dementia patients in certain circumstances. I will seek to use a combination of the statistics and academic analysis referenced above to argue that the correct time to act and clarify the law on this area is now.

Advances Decision to Refuse Treatment (ADRT)

The purpose of an Advance Decision to Refuse Treatment (ADRT) is to extend a patient’s personal autonomy into the future and prevent them from being subjected to unwanted treatment once they have lost the capacity. Under s25 MCA, an adult with capacity is entitled to refuse the future application of life saving treatment provided that a number of administrative criteria are satisfied.

This practice allows adults with capacity, who may expect to lose capacity in the future, to retain an element of control over their healthcare, treatment and, ultimately, death. People with a diagnosis of dementia may consider themselves as falling under this category of anticipated incapacitation. The existence of this ADRT option is, in theory, reassuring for patients. Indeed, Michaela Poppe found that, following discussions regarding Advance Care Planning (ACP), people with dementia reported that they were less worried about the future.

Clearly, then, ADRTs (and wider ACP) can provide relief and comfort in an otherwise extremely stressful time. It might then be suggested that it would generally be appropriate for the majority of those diagnosed with dementia to seek to make ADRTs to extend their autonomy and control over their futures. However, there are questions to be raised about the rigidity of the MCA and the absence of clarity — or indeed, mention — of some key provisions and how these may relate to dementia patients in specific situations.

Issues with ADRT procedure

The fact that somebody is living with dementia does not guarantee an absence of enjoyment in their life, albeit perhaps to a limited extent as a result of their illness. Regardless, it is not necessarily true that a dementia patient is unable to find satisfaction and joy in their life following their loss of capacity. Indeed, ReaDementia – a blog dedicated to the disease – explain that quality of life “does not automatically decrease as dementia progresses” and does not remove someone’s ability to feel love and joy. The difficulty perhaps originates in the fact that this is difficult to truly appreciate from the outside, both from an external and internal perspective.

Speaking of the admittedly broader category of disabilities in general, Stephen Smith argues that consistent evidence shows that “doctors routinely give a lower quality of life score to patients with disabilities than the patient would give”. From an internal perspective, a person with a recent diagnosis may not anticipate a happy and content life following their loss of capacity, even though it is a real possibility. For that reason, they may sign an ADRT that will come into action once they do lose capacity. This then becomes binding on the doctors and medical staff that will care for that patient.

In the event they require life-saving treatment (and in the event that this was refused by a s25 ADRT by the patient when they were autonomous) post-loss of capacity, a doctor would be prevented from administering such treatment due to the existence of the ADRT. So far, this presents no clear issues. The ADRT is simply fulfilling the function that it was created for. The potential issue is circumstantial and, it can be argued, is specific to the case of dementia.

Revoking an ADRT directive to withdraw life-saving treatment

In the scenario outlined above, the patient is living a happy and satisfied life — the possibility of which they may not have appreciated at the time they signed the ADRT — at the time that they fall ill and require life-saving treatment. Now, at a time they require life-saving treatment, a doctor is legally prevented from providing it. The issue — it can be suggested — lies in that it is seemingly impossible for a dementia patient to rescind the ADRT following their loss of capacity and their unexpected realisation of satisfaction with their current life.

Under s25(2)(c) of MCA, an advance directive is invalid if the patient does something clearly inconsistent with the decision in the period between signing the ADRT and the point at which treatment would need to be provided. But sources such as MyADRT — a website that the public visit in order to gain a better understanding of the ADRT process — suggest that this is only the case if the expression occurs “during periods of capacity”.

Indeed, the legislation itself is silent on whether incapacitated people can invalidate their established ADRT through conduct and there appears to be a lack of case law that deals with this question. Further, whereas patients with capacity can withdraw an ADRT at any point under MCA, this is limited to those with capacity.

Sabine Michalowski argues that it would be inconsistent to prevent an incapacitated patient from withdrawing their ADRT but allow them to invalidate through their behaviour. The MCA’s silence on incapacitated invalidation falls far short of stating to the contrary. If Michalowski is correct, it would become extremely difficult for the ADRT to be removed, and therefore, for life-saving treatment to be legally justified.

The hypothetical scenario outlined above, that a dementia patient who unexpectedly finds happiness and contentment having lost their capacity but already signed an ADRT refusing life-saving treatment in the event they lost their capacity to dementia, is, from that point on, seemingly incapable of reversing — by any means — their decision.

Potential recourse

One potential loophole could be suggested in s25(4) which provides that an ADRT is invalid if “there are reasonable grounds” to believe that the patient did not anticipate the current circumstances, and their decision would have been affected if they had. On the surface, this seems to provide the safety net we have been searching for. However, the fact of their dementia and the fact of their requiring life-saving treatment are not unexpected circumstances.

To the contrary, they are the very reason the ADRT was signed in the first place. The ‘unexpected’ element comes purely from their contentment with their life in its current form. I argue that this does not provide the objectivity and reliability required to allow sufficient security for the patient in this event.

Advance Decision to Refuse Life Saving Treatment — time to revisit

Therefore, there appears to currently be no clear solution in practice. Was this an oversight by parliament when drafting this legislation? Whilst the circumstances in which this question arises may be specific, data suggests that it is not as rare as it may seem. It can certainly be argued — perhaps very strongly — that the rigidity of an ADRT is the best way of protecting the autonomous voice and decision of a patient. To question the application of an ADRT is to discredit the very purpose of creating one. However, it is, I suggest, at the very least worth discussing whether there ought to be a conversation regarding the application of an Advance Decision to Refuse Life Saving Treatment in the situation outlined.

This is not an easy question. It raises moral tensions between respecting the decision of the autonomous person and therefore disrupting a reasonable quality of life that is seemingly being enjoyed by a person who is no longer capable of appreciating that previous decision. I do not suggest that there is a lack of shared personal identity between a person in their autonomous stage of life and then in the stage of life once they have lost capacity.

In theory, there is no reason why the ADRT should not be allowed to stand. The person who made the decision is the same person who shall experience the consequences of that decision. However, there are implications of allowing someone to die who does not recall making that decision at all, through obeyance of an ADRT — particularly when they may be enjoying their life. It is not change that is required in this area, merely clarification of the law and awareness-raising so that those who will be diagnosed with dementia – one third of us according to Alzheimer’s Research UK — can feel safety and security in the decision they make.

Michael Thomas is a final year law student at Cardiff University, with a keen interest in commercial law, particularly applied to the sports and entertainment industries.

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